Understanding Asperger’s Syndrome

A 16-year-old girl, trapped in a prison without walls.

Esther came across a crumpled up-paper on the floor of the den. Curious, she straightened it out. It was a poem, in her daughter Sara’s handwriting. “If You But Dared,” the title read.

i was a child/who was hurting
no escape except through yearning
nursing wounds no one could see
anesthetized by fantasies

Tears of wonderment came to Esther’s eyes as she scanned the lines her 16-year-old had written. Wounds no one could see… Those must have been the wounds of loneliness. Sara had been a loner all though elementary school, and now in high school, the pattern was continuing.

The jokes, camaraderie and easy conversation characteristic of young teens eluded her. She was moody and remote, absorbed in her books. She did well in school with barely any effort but her social skills lagged far behind her academic achievement. She denied being unhappy and refused to talk about her feelings.

But misery cried out from the page.

memories bring back the ache
pain that ebbed once more awake
the years roll back the sense of loss
once more a child waits to cross
a deserted corner far from home
in the dark she lingers alone
a traffic light that never changes
and so she waits and waits for ages
to all of you who passed her by
noticed not her haunted eyes
all of you who might have cared
reached out a hand if you but dared
unlock the prison without walls
find the captive sad and small
no voice to call no words to share
no brush to paint the deep despair
you never saw you never asked
what lay behind the child’s mask
my heart still hurts from that neglect
despite the years I can’t forget

Esther’s eyes blurred with tears. The description of a forlorn little girl in an invisible jail shocked Esther that her daughter perceived herself as abandoned by everyone. You never saw you never asked… How they had struggled to understand and help her! But she never allowed anyone inside her “cell.” Like the captive in the poem, she seemed to have no voice to call, no words to share.

Over the years, the family had gotten used to Sara’s idiosyncrasies. She was painfully shy and inhibited around people. Feelings easily overwhelmed her. She broke down in tears over any degree of disappointment, stress or frustration – and couldn’t communicate to others what the trouble was.

Advanced scholastically, Sara nevertheless had no idea how to engage in the simple amenities of routine conversation. It made her appear slow-witted, immature, or as children labeled it, “weird.”

First Grade Blues

It had all started out so differently.

“She was so cute and endearing when she was little. She had an amazing vocabulary, far beyond her age level,” Sara’s mother recalled. “When she piped up, you couldn’t help but smile. But trouble started as soon as she hit first grade.”

As talkative and spirited as the little girl was at home with her parents and siblings, at school Sara seemed withdrawn and wrapped up in her own world. She daydreamed and doodled in class. At recess she wandered off by herself, gazing wistfully at the games others were playing.

We attributed her apartness to boredom.

“At first we attributed her apartness to boredom,” her mother explained. “But that didn’t explain the other ‘oddities’ – the extraordinary shyness, a stiff, awkward gait, not swinging her arms like most kids when they walk… and her difficulty in maintaining eye contact. She was always shy, but this odd behavior seemed to have developed when she first stared mixing socially with other kids.”

Sara resisted her parents efforts to arrange for counseling. It wasn’t until she was in tenth grade that her parents induced her to cooperate with an evaluation. The child psychologist who evaluated Sara called in her parents to discuss the findings: Sara suffered from a neurological disorder called Asperger’s Syndrome. They blinked in shock. What was Asperger’s Syndrome?

Until 1994, no one, including psychologists and behavior specialists, knew much about Asperger’s Syndrome. The disorder went unrecognized, and children who had it were simply labeled "weird," “off-beat” or “emotionally disturbed.”

Named for Hans Asperger, an Austrian physician who first identified it in the 1940s, Asperger’s was first defined as a mild variant of autism, but that designation has been contested by many scientists who feel it is not part of the autism spectrum.

According to psychologist Michelle Ver Ploeg in Asperger’s Syndrome in Young Children, though some symptoms seem similar to classic autism, there are important differences. Asperger's chidren and adults, unlike those afflicted with autism, often show true emotional connectedness, including an ability to empathize that is uncharacteristic of autism.

Those with Asperger's Syndrome have problems with nonverbal communication and the ability to draw social inferences. The social cues that guide most people through day-to-day interactions are a foreign language to them.

Put simply, these children desperately want friends, but don’t know how to make or keep a friend. By contrast, those with autistic symptoms are emotionally remote and disconnected, for the most part incapable of a mutual, two-way relationship.

It wasn’t until 1994 that Asperger’s Syndrome finally became an official diagnosis in standard medical lexicons. Slowly, awareness of how this disorder impacted children began to filter down to educational channels. Schools finally had an approach to understanding those 'odd' students they'd been diagnosing with ADD, learning disabilities and bipolar disorder – all of which come with various symptoms that may mimic Asperger’s.

Even today, Asperger’s Syndrome is not widely recognized by the public or by health care providers. An estimated one out of every 1,000 people suffers from the syndrome. Much progress has been made in identifying children with the disorder, but there remain thousands of adults who were never correctly diagnosed.

Asperger’s, or “Aspies” as some humorously refer to themselves, generally have average-to-superior intelligence and – like Sara – advanced early language acquisition. However, they often seem to be “mind-blind” when it comes to social interactions – failing to perceive what is obvious to everyone else by “reading” body language, eye-gaze and facial expression.

They may display an intense preoccupation with an unusual focus of interest, as well as repetitive behaviors such as rhythmic rocking or flapping of the hands.

The Young Child: A preschool child might demonstrate complete unawareness of the basics of social interaction – how to join a game or share toys or belongings. He or she may be oblivious to basic social cues like waving hello and goodbye, smiling one’s pleasure, frowning or glaring to show displeasure – and may use these non-verbal messages totally inappropriately.

Elementary School-Age: One often hears the phrase, “poor pragmatic language skills” in relation to children with Asperger’s. This means that the individual cannot hit on the right tone and volume of speech. Their voices are often flat and expressionless, too loud, or too high-pitched. The person may stand too close, avoid eye contact, or stare at people. Many are clumsy and have visual-perceptual difficulties.

Non-verbal learning difficulties, subtle or severe, are common, especially in reading comprehension and math work that demands imaginative problem-solving and critical thinking.

The child may become fixated on a particular topic and bore others with incessant talk even when other children have given clear signals that they are not interested. Some have difficulties tolerating changes in their daily routine and become agitated when faced with an abrupt change in schedule. Change must be introduced gradually.

Their behavior evokes ridicule, dismissal or annoyance from peers.

The Adolescent: In adolescence, social demands become more complex and social nuances, more subtle. This may be the most difficult time for individuals with Asperger's. They are so obviously “not with the program” that their behavior evokes ridicule, dismissal or annoyance from peers. Because of his social naiveté, a teenager with Asperger’s may not realize when someone is trying to take advantage of him. He can be especially vulnerable to manipulation and peer pressure.

As individuals with Asperger’s enter adolescence, they become acutely aware of their differences and keenly sensitive to rejection. This may lead to depression and anxiety. The depression, if not treated, may persist into adulthood.

Treatment for Asperger’s Syndrome

Social skills training is one of the most vital components of treatment for all ages. According to experts in the field, the individual needs to learn body language with the thoroughness and consistency that one must learn a foreign language when living in a foreign land.

Those with Asperger’s must learn concrete rules for eye contact, social distance and more normal body language, including posture and gait. Since many people with this disorder are clumsy and have terrible table etiquette, they must be taught how to conduct themselves at mealtimes without evoking distaste in those near them.

Since they lack self-awareness and have trouble reading other people, “Aspies” do not realize that watching someone wolf down his food, eat noisily, or take second or third helpings when not everyone has had a first portion, can be upsetting.

They need concrete lessons in identifying emotions (their own and others’); in practicing good hygiene, phone skills, car and bus decorum, and how to win and lose. They need careful instruction on how to take care of personal attire; how to respect other’s ownership of belongings; how to make an appropriate gesture of affection, and how to know when it’s inappropriate to give a hug or a pat on the back.

They need a great deal of practice and role-play regarding how to build a friendship; how to make conversation, how to share and to wait with patience; how to handle being upset; what constitutes lying; how to win and lose; how to be part of a discussion group or project.

It’s easy (but a trap!) to turn social skill goals into a negative checklist of behaviors to be corrected. Don’t fall for this. The idea is not to make life easier for the parent or teacher; the idea is to make life easier for the child. That’s why the emphasis should be on explaining, teaching and practicing – not criticizing, ridiculing or blindly correcting.

It’s important to make the lessons fun, helpful and non-threatening. Use games, charades, jokes, cartoons, movies, story books, field trips or whatever else works, so that the child will grow while feeling successful – as opposed to incompetent.

Many children with Asperger’s can be included in mainstream classrooms. But those with a more severe case will need to be in small, self-contained classrooms or special schools.

Research shows that most children with Asperger's learn intellectually rather than intuitively. Instead of role modeling or subtle hints, they need concrete information, explanations and practice.

New Poems

Sara first came to treatment in high school, after experiencing untold ordeals of social isolation and loneliness. She was fortunate to have a relatively mild form of Asperger’s, and the gift of being able to use the medium of writing to overcome her impairment in social skills and communication.

On paper, she came alive – almost as a different person. Even her parents were astonished to discover what a vibrant life Sara led in her private writings. We helped her tap into this talent and convert it into a tool for becoming more in sync with those around her. We taught her to dig deep into herself and discover the emotions behind the “child’s mask” she had written about in her poem.

She was taught how to “read” body language.

We taught her to generalize these emotions to others. We helped her learn how to “read” facial expression and to interpret social situations through facial expression, tone of voice and body language. A rigorous program of social-skills training over many months concentrated on helping Sara maintain eye contact and learning how to initiate conversation with others.

Perhaps the most heartening sign of Sara’s progress came with a beautiful poem she wrote as she prepared to graduate high school. This poem had the same rhythmic cadence as her earlier one, but it couldn’t have been more different. This poem celebrated friendship, and evoked a sense of wind, sun and laughter.

For those who read the poem, the tears it evoked were tears of happiness… for the child who at last felt a part of humanity.

Related Articles:

About the Author

An acclaimed educator and education consultant, Mrs. Rifka Schonfeld has served the Jewish community for close to thirty years. She founded and directs the widely acclaimed educational program, SOS, servicing all grade levels in secular as well as Hebrew studies. A kriah and reading specialist, she has given dynamic workshops and has set up reading labs in many schools. In addition, she offers evaluations G.E.D. preparation,, social skills training and shidduch coaching, focusing on building self-esteem and self-awareness. She can be reached at 718-382-5437. Visit her site at rifkaschonfeldsos.com.

Visitor Comments: 41

(35)
barbara stoll,
July 17, 2013 3:10 AM

adopted and possible Jewish lineage

Was told by my birth mother I am Jewish (I am adopted). She died of cancer. I have an asperger child. I've lived with and studied him all his life. I wish now to dedicate myself ONLY to aspie Jewish children. There is a spark in these kids that needs to be unleashed. I want to give it to them. Please give me in a room of aspies and I am in heaven. I need it to connect to my Jewish roots, and bring my aspie son back home. 300 percent of my time to you and those wonderful kids.

(34)
Anonymous,
June 10, 2013 4:11 PM

I am the mother of a 22 year old young man with AS. Autism is indeed a spectrum disorder and AS is on the higher end of the spectrum. Also, no two people with AS are exactly alike. If you have met one person with AS, you've met one person with AS. Yes, people with AS may have similar traits. However, they are NOT cloned sheep! Finally, please remember that individuals with AS have a lot to offer the world. My DS is a mensch. I've known a few neurotypical individuals who are most definitely NOT mensch's.

(33)
Anonymous,
February 11, 2013 1:22 AM

looking for trip to israel for jewish teens with asperger's

My daughter has Asperger's. She is 14, very high functioning, excellent academically, in mainstream school, but has great difficulty making friends, She very much wants to visit Israel, and I think a group of kids like her would enjoy seeing Israel without the pressure of being in a group of ordinary teens. Anyone with info? My daughter attended orthodox yeshiva through 8th grade but is now in publlic high school.

Zvika,
March 3, 2014 12:39 AM

Birthrigth and/or Taglit have special programs/tours

The son of a friend recently came on a tour in Israel with either B-right or Taglit. contact them and ask.Good luck.

(32)
Anonymous,
April 25, 2012 4:36 PM

Support system

I would really like to read a response to the David's question - is there any benefit of a formal diagnosis of somebody with Aspergers symptoms later in life (50 years). I am a wife of an Aspergers patient (not formally diagnosed). Is there any support for the spouses to help us to deal with our emotional needs? Thank you!

Anonymous,
January 13, 2013 8:14 AM

and what about children of Aspergers parents?

this diagnosis would explain the h**l I went thru as a child and continue to have to cope with today.

(31)
derrick,
September 17, 2011 5:16 AM

professional diagnosis

I have believed my daughter, now 20 has aspergers syndrome. what type of doctor should I address my concerns with, and how do I tell her that I believe she has it? and how do I provide info for her, how do I tell her

(30)
David,
July 6, 2011 9:27 PM

Maybe I have Aspergers?

Am 51 year old man, now married 10 years and we have a small family. I was brought up in the UK, but have lived most of my life in Israel.
My whole childhood, for example crying during my first months of primary school, being bullied there and early secondary school until I transferred to a school with nicer pupils, poor hand writing, not "fitting in", inferiority complex and finding it difficulty socially also to this day - all indicate that I have Asperger.
With this, I have a BSc degree and most of my adult life I have managed to maintain a career as a software developer most of the time (but the last few years have been difficult). Also my early years of working have had ups and downs - for example adjusting to corporate changes when I worked for a big company.
As I moved into adulthood, I managed to cope with myself - much by observing pears to see what is "normal" behaviour and responses (verbal and otherwise) in different situations. Also as I moved jobs over the decades, I have become more flexible towards different work environments.
As I have learned (and continuing learning) to cope, what is the benefit in commissioning a formal diagnosis of myself? Would there be any tangible benefit to my wife (and children)?
What are the pluses/minuses of announcing publicly (for example in the community and neighbourhood), that I might have this? Is it likely that people who do not relate to me more positively will start relating to me differently, or could it be the other way around? In my life, I have occasionally taken public tasks in the synagogue community etc. Maybe part of my attitudes (for example how rules are followed) are related to my condition.
Interested to hear responses on this forum. I hope the moderator is able to accept and forward to me private responses, if there should be any like this.

(29)
Esther,
June 9, 2011 1:45 AM

mirror

I was shocked to discover someone's experience, which seems to mirror mine so closely. Now I have to find the key to get out.

(28)
Freeda,
January 20, 2011 5:43 AM

Asperger Social Group

I, too, would love to know if there is a social group for Jewish, young adults (in their early 20's especially), that have Aspergers or similar social issues. A friend's son is extremely high functioning, having attended college and working at a successful job. However, socially, he is not successful. Any thoughts?

Boca mom,
June 18, 2012 5:03 PM

There are adult groups

You need to look in your community, but where I live in Florida the local college has groups for autism and aspergers for all different ages. Unfortunately, funding continually gets cut for these programs and the social issues of aspergers make the people not too keen on going, so it's a challenge to maintain them.

(27)
Wa Ford,
January 20, 2011 4:28 AM

Aspergers syndrome is not like autism. They do not have the speech delay and the learning disability. Some with autism have seizures and digestive problems that get worse in adolescents. If a person has Autism a good orgainzation called Harbor Regional Center (in california) can help or special schools may help. Some with aspegers may qualify for help from these. The peson writing this has high functioning autism.

(26)
Keith R Kelley,
January 17, 2011 8:42 AM

Exceptional and noteworthy

Thank God for those who have not only come to comprehend the disorder, and pursued and researched so faithfully, found some form of treatment to improve the lives not only of the victims,but also of the loving families. It is heartwarming.

(25)
Anonymous,
January 12, 2011 3:42 PM

social skills resources

A great resource is the social thinking books by Michelle Garcia Winner, aimed at higher lever children with aspergers. There are books from elementary level through teen/young adult. For adults with AS, look at Grandin and Barron's Unwritten Rules of SOcial Relationships. I loved hearing how this young woman's writing became the key that helped her connect with people. People with AS are all so different; and all, so different on the inside from what they may show on the outside. (A lot like neurotypicals in that way, but, perhaps, more so........)

(24)
Anonymous,
January 9, 2011 10:43 AM

Good article - now what?

I have a 22 year old son who would like to meet other young adults with AS. Is there a decent web site that exists for this??

(23)
Anonymous,
January 8, 2011 4:00 AM

great article

My daughter and I, who also has been in some social groups for asbergers syn, read the whole article. We spoke about many helpful topics! Thank you for so intelligently writing on behalf of these amazing people. We both hope that many will learn from these discussuions.

(22)
Anonymous,
January 6, 2011 6:04 AM

reading materials?

Can the author or any one else recommend helpful reading materials to help teach children with Asperger's social skills?

(21)
R Klempner,
January 6, 2011 2:02 AM

CA Regional Centers

Regional Centers in CA happen to be one of the places most notorious for refusing to serve those with Asperger's. This does, however, vary from one Regional Center to the next.

(20)
WA Ford,
January 5, 2011 8:37 AM

Diffrence between aspergers and mild autism( I have the latter)

The difference between Asperger's and mild autism is in mild autism the indivisual has a speech delay and a learning disability which are not found in Apseger's syndrome. A child with either can profit from social skills training offered through Regional centers if you live in California also a special class is good because fewer students less frustration.

(19)
Anonymous,
January 5, 2011 6:04 AM

Living with AS

My niece lived for over 40 years without knowing why she was the way she was. While surfing the 'Net, something I normally don't do, and there was an article describing her to the proverbial "T." We have to have a sense of humor as she and my sister and I live together. She has AS, I've got brain damage from a massive stroke. We talk and she doesn't listen. She talks and I forget what she said in ten minutes. She still has trouble looking at faces and understanding what facial changes means but she's getting there. She looks around people and looks at the backgrounds, it is enough to drive us both crazy.
I still think that it was a miracle that I discovered her difficulty on the 'Net while looking for one of the problems I had with my memory problems.
She is working full-time and going to college to get her Ph.D. in psychology so she can help others with AS. That will make three doctorates in the same house. But the most important one is going to be hers as she has had to overcome many, many difficulties in order to get as far as she has. To say we're proud of her is to say we need air to live.
I hope anyone with AS is encouraged by this comment. There seems to be no limits except what one wants. When I had a stroke I was told that I would never walk, talk or walk again. Uh huh. Six months later I was walking, talking and working. NEVER let a doctor tell you what you can or cannot achieve.
Thanks to Hashem for our miracles.

(18)
R Klempner,
January 4, 2011 7:01 AM

wanted to add...

Despite the negative slant to this article (and a couple of the comments), having Asperger's isn't terrible...it's just very different and often challenging. The minds of those with Asperger's or high-functioning autism and the like work in unusual ways. These are often very creative, gifted individuals, who with proper therapy can live very rich lives. Their hyper-focus on their preferred subjects make them specialists in these areas, for example. My family members on the spectrum are treasures! When we see adults suffering from the symptoms of their AS (often causing hardship for spouses, etc.) we have to remember that effective, compassionate therapy for AS and autism is very recent, and these are individuals who struggled through those key early years without the understanding and assistance of the medical community. Many developed depression and/or addictions while trying to cope. We can't assume that these scary stories apply to everyone with these diagnoses today.

i agree,
November 9, 2011 12:52 PM

I agree!

I agree with what you said. My dear friend's son has high function autism. he has massive sensory, emotional, and social issues and didnt learn to speak until he was 6. yet, with therapy a few times a week, medication, and a phenomenal mother he is flying high and willl learn how to be an amazing adult. hes even learning how to make a few friends. children and teens with autism can be normal adults - they just may take longer to get there.

(17)
R Klempner,
January 4, 2011 6:50 AM

good for awareness, but not 100 percent accurate

I have a few family members diagnosed with either autism, Asperger's or both. A couple points: The article makes it sound like Asperger's isn't on the Autism Spectrum, though many experts, if not most, regard it as such. The working draft of the upcoming (DSM-V due out 2013) reclassifies Asperger's as a subtype of autism. While declaring that Asperger's is distinct sounds like just semantics, there are children deprived of services in schools and state programs because they have been labeled as having Asperger's but not autism--although the criteria are almost identical and quite subjective. They run in the same families and individuals often have been diagnosed with both, depending on the therapist doing the assessment. The strategies for treatment are also largely similar.
I'm also disturbed by the author's statement: "Those with Asperger's Syndrome have problems with nonverbal communication and the ability to draw social inferences. The social cues that guide most people through day-to-day interactions are a foreign language to them...Put simply, these children desperately want friends, but don’t know how to make or keep a friend. By contrast, those with autistic symptoms are emotionally remote and disconnected, for the most part incapable of a mutual, two-way relationship."
This statement is overly simplistic and misleading. The same individual can appear by this standard to be autistic in childhood, but an Aspie as an adult or after therapy, or even differ depending to sensory input, health, mood, etc. Also, some children fitting this description are merely shy or have other issues. Aspies require other symptoms: special interests, stim, etc.
It is also important to stress that early intervention is really important. Our HMO recently began assessing all toddlers for signs of developmental disorders. The case in this article would likely have been caught earlier if that had been true in her toddler years--therapy would have come earlier.

(16)
Anonymous,
January 3, 2011 9:31 PM

Challenge of the heart

Having read a number of articles about people who face social challenges ... it has given me some insight into the lonlines they face and made me more sensitive.
I try and make a concious point of seeking out those *different* *weird* people who keep to themselves adults both at work and socially .... to reach out , acknowledge them, engage with them and validate them by including them in my *circle* it has been very rewarding to see how grateful they are and how much in need of love they are.
This is a challenge to all parents out there, myself included to observe our children (yes it takes a community to raise socially healthy children) , how they relate to other children , the less popular, more insular ones and to encourage them to be open to them, to be friendly and caring to them and to engage and include them in thier games and sleepovers.... maybe we can encourage them to invite the person they would least expect to do so.
Each one of us can make the difference in the lives of those in our communities, we may not understand but we can try.
Hugs to Esther and Sara, Sara may you be touched by beautiful people, with a sincere and loving interest in you.

(15)
,
January 3, 2011 4:58 PM

I am a teacher of an 11 year old boy, who just found out that he has AS. I listened to him as he described how he feels and what the world is like from his eyes and it is unbelieveble. He is beautiful and he knows he is because we all tell him he is. We make sure to educate his classmates and they are very good to him.

Anonymous,
November 9, 2011 12:57 PM

treat him normally! because he is normal!

(14)
Anonymous,
January 3, 2011 2:46 AM

First, thank you for this article. I need to read of these kinds of differences to get out of my "poor, pitiful, stressed me" syndrome that I was able to name for myself. Hooray! To know that we are all gifts from Hashem and I am hopeful, cared for by a few humans as well as Hashem is a rich reward in itself. We are all made by Hashem in such unique ways and should be appreciated for our humanity no matter the situation within ourselves. Rock On! Consider that there is music within all of us and sometimes some of us know the lyrics... please just name that tune and I will sing along. Brura

(13)
Peter Blum,
January 3, 2011 1:12 AM

This really helped me to understand my Aspergers better.

At 55, I was diagnosed with Aspergers. As I read this, it described my childhood and some of the challenges that I had with great precision and confirmed that I am not alone.

Esther,
June 9, 2011 1:39 AM

dito

Today I read the article "understanding Asperger's Syndrom" and came across your comment. I am about your age and never heart something like this before, which mirrors so much my situation. Do you have some helpful ideas?

(12)
Anonymous,
January 3, 2011 12:09 AM

Labeling people

While this may be an actual illness, referring to people as weird or abnormal is simply labeling people in appropriately and hurting ones feelings and just because one is not like the standard normal person whatever that means doesnt make them abnormal. Take a good look at all the "normal" people and then define as to what really normal is please....

(11)
earl cherry,
January 2, 2011 9:04 PM

Dealing with being different

As a child who was born with P.E., curvature of the spine, A.D.D. & a speech impediment, i can relate to this article. I was transferred to five different schools before the age of 12. It took one teacher to take the time to tell me, i could be taught! I don't have the time here to tell my life story. I earned a B.S. degree, and raised my G.P.A. to almost a B. Along the way, i had to deal with the lost of my Sister, & Father, Physical, & sexual abuse, & life long depression. Hashem never left me. I give a lot of credit to my late Mother "Moma Lillian", Rabbi Herzfeld, & my Wife Wanda. don't ever give up!!! I hope to write my life-story some day.

(10)
Eliana,
January 2, 2011 9:00 PM

my son

My son is 22 years old and has AS. He was diagnosed when he was 17 years old. I am so happy that more people are becoming aware and educated about AS. Thank you for this contribution towards that goal.

(9)
NIcole,
January 2, 2011 8:53 PM

My youngest son has been diagnosed with "Pervasive Development Disorder" which is the official terminology of Asperger's. My son is in 9th grade and has struggle socially for many years. My husband and I have had to deal with several situations involving our son threatening to kill himself over something as trivial as making him stop playing video games. He gets so wrapped up in this fantasy game world that he cuts himself off from all human contact. When this happens we force him to shut off the games and he flies into a fit, making it sound like it's totally devastating to him and says things out of anger about nobody caring about him, not wanting him around, and wishing himself dead. Even goes so far as to attempt to choke himself in these situations. He sees a counselor regularly, has help in school and outside of school by Psycho-Social Rehabilitation workers, but when fits like this happen we simply have a very difficult time breaking him of suicidal talk and end up stressing ourselves over trying to deal with it all. Sometimes I feel as though I have failed as a mother and that my son will never be able to live a normal or even a semi-normal life as an adult.

(8)
No name,
January 2, 2011 7:42 PM

Wouldnt wish him on my worse enemy

My ex husband has Aspergers. Prior to marrying he was the perfect match. Then it changed. As soon as he had to take any responsibility he became a nightmare to live with. Loud and obnoxious, rude and bullying, would not take any responsibilty, thought he could railroad me into anything he wanted, wouldnt listen to reason. After 13 years I left. In hindsight I should have gone 6 months after I realised he had a problem

(7)
bonnie,
January 2, 2011 5:25 PM

Need for Early Intervention

This very touching account points up the need for early intervention for children on the autism spectrum. Sara's poignant poetry reflects not only her intelligence but her longing to be understood and to understand and "be with" others. What might her life have been had she not been what sounds like the "decision-maker" in the determination of whether she should or should not engage in treatment prior to high school. Many two, three, and four year old children on the spectrum can be taught social thinking and social skills by a professionally certified speech/language pathologist in coordination with special educators. Their parents, however, must be the decision-makers at that young age. Individuals who are experienced and excellent professionals typically can work through a child's refusal "to cooperate for an evaluation."
That Sara has continued to progress in school as well as feel more at ease wtih humanity is a wonderful thing for her and her family. I, too, would have liked to read her graduation poem.

(6)
Anonymous,
January 2, 2011 4:34 PM

Additional perspective from an adult Aspie......

As a child, I didn't understand that the isolation experienced with AS was not the norm. It's like a child that doesn't know their vision isn't 20-20. They can't see the blackboard clearly but don't know others do.
My point being that there is a blocked perspective, one because of being a child, but compounded due to Asperger's Syndrome.
I used to watch kids take a stack of books from the library and always wondered what they did with them. Having impaired reading skills starting in second grade, I didn't know that most kids could read at 10 times the speed I did and comprehende what they read, which I mostly didn't. I would find some obscure point of what I read and focus on it, completely missing the context of the actual message. It was very embarrassing so I just listened to discussions to learn rather than reading an assignment. It worked; I was an honor student and convinced teachers to read test questions to me and let me sit on the floor in the back corner away from other students so I could "be away from their energy" which was very distracting. Little did I understand, I was the distraction!
Not much has changed, but now I approach it with humor, coping skills and only occasional sensory overload! I even know how to socialize and learned how to make socially appropriate conversation.
All the while, I really want to talk about nutritional science, my obsession, and find social chit-chat quite uninteresting. Thank goodness for therapy and coaching over the years! I have a great social life but can say, at 52, it's still like being outside looking in. I'm pretty sure that part of AS never goes away.

(5)
rochelle,
January 2, 2011 3:39 PM

Excelllent article

Would have liked to see graduation poem

(4)
Carolyn,
January 2, 2011 3:12 PM

Hightened awareness

It is very important to realize that those contending with the various forms of autism, such as Asperger's have an overdeveloped sensory system. Sight, sound, touch, smell are overstimulated at all times. As a society, we have made everything bigger, louder, brighter, overly scented with way too many choices. We need to take a step back and realize that we all have sensory issues of some sort. Lowering "the sensory volume" in our immediate surrounding will make for a gentler and easier life for everyone.
Thank you for this article.
Carolyn Feder
Founder of Sensory Interior Design

(3)
ruth housman,
January 2, 2011 3:05 PM

taking wing

We went out for dinner for the New Year at a lovely restaurant by the ocean, Skipper's. There was a family with a young woman who flapped her arms and was very endearing to us, watching the scene, as they were taking a family photo right next to us.
I don't know if she was diagnosed with Asperger's but it was clear she was "different". I have learned to look at such differences "differently" over time, and there was such a beauty to this young woman. She came over several times and shook my husband's hand, without saying anything.
We were charmed.
There are so many unique qualities among those who have, for one reason or another, a very different ways of being. And yes, everything that is written, about bringing the hurt these children experience, in not being able to access how we are, is truly of great value, for them, because they just don't know how to read how it is, we act and do it socially.
But beyond this, I felt the beauty within that first poem, and the angst, but within, a true budding soul in all that yearning. Poetry is about angst, about life's many sides, and we all experience solitary and alone, and it is truly a journey that takes us out of the nest and makes us fly. But the bird in its struggles, before it takes the plunge, is also, so very beautiful.
As flapping is to wings, so it is, I do perceive great metaphoric connect in all that we do.

(2)
Anonymous,
January 2, 2011 2:40 PM

having Asperger's

I too have Asperger syndrome, but am a fairly quick learner, particularly with social skills. However, I tend to think how differently (if not "defectively") how my brain is wired. When I feel like a prisoner without walls, I frame it as missing out on more opportunities offered to me than I've taken advantage of thinking I'd feel worse coming back than if I didn't go at all. Even so, I have taken advantage of the Moishe House at 2 different locations in my area and that helps cultivate my social skills. I am also regarded as very resourceful when it comes to getting what I want or need, such as obtaining medications inexpensively or for free without health insurance, given how expensive that is. Also, when I am worried with myself and staying at home, my social worker has encouraged me to write worry notes down and place them into a box as well as write down on different colored paper what I am grateful for, which is then reviewed between my social worker and I during almost all of our sessions. Indeed, it is a great idea when something is bothering anyone with worries to write it down/off and try to be done with it. This can help mitigate perseveration, at least to some degree...As it stands with me right now, I will be turning 30 this year and still live with my folks at home while I have 2 part-time jobs and pay my folks back whenever needed on a few bills as well as take on expenses of my own including car insurance and my student loan payment that is expected to be paid off in about a year and a half from now...All in all, I make the decision whether to stay at home or go out to social events, mostly at the Moishe House (www.moishehouse.org). With individuals with AS, it is a matter of fight or flight (usually it's the latter). So, it's a matter of how sociable I am in such situations, which may not necessarily be to the fullest but at least to eat and mingle to some degree, and trying to be there for a min. of an hour or so.

(1)
Linda,
January 2, 2011 1:53 PM

The only thing that Helped

my grandaughter was the same way.my daughter pushed her continually, to do the normal things as a teen she would make her be responsible for things she had to do. She graduated colledge with a bachlor degree, has many friends, and even a boy friend who adores her quirkyness. My daughter would not leave her to herself, but seen her intelligence and capabilities.

I just got married and have an important question: Can we eat rice on Passover? My wife grew up eating it, and I did not. Is this just a matter of family tradition?

The Aish Rabbi Replies:

The Torah instructs a Jew not to eat (or even possess) chametz all seven days of Passover (Exodus 13:3). "Chametz" is defined as any of the five grains (wheat, spelt, barley, oats, and rye) that came into contact with water for more than 18 minutes. Chametz is a serious Torah prohibition, and for that reason we take extra protective measures on Passover to prevent any mistakes.

Hence the category of food called "kitniyot" (sometimes referred to generically as "legumes"). This includes rice, corn, soy beans, string beans, peas, lentils, peanuts, mustard, sesame seeds and poppy seeds. Even though kitniyot cannot technically become chametz, Ashkenazi Jews do not eat them on Passover. Why?

Products of kitniyot often appear like chametz products. For example, it can be hard to distinguish between rice flour (kitniyot) and wheat flour (chametz). Also, chametz grains may become inadvertently mixed together with kitniyot. Therefore, to prevent confusion, all kitniyot were prohibited.

In Jewish law, there is one important distinction between chametz and kitniyot. During Passover, it is forbidden to even have chametz in one's possession (hence the custom of "selling chametz"). Whereas it is permitted to own kitniyot during Passover and even to use it - not for eating - but for things like baby powder which contains cornstarch. Similarly, someone who is sick is allowed to take medicine containing kitniyot.

What about derivatives of kitniyot - e.g. corn oil, peanut oil, etc? This is a difference of opinion. Many will use kitniyot-based oils on Passover, while others are strict and only use olive or walnut oil.

Finally, there is one product called "quinoa" (pronounced "ken-wah" or "kin-o-ah") that is permitted on Passover even for Ashkenazim. Although it resembles a grain, it is technically a grass, and was never included in the prohibition against kitniyot. It is prepared like rice and has a very high protein content. (It's excellent in "cholent" stew!) In the United States and elsewhere, mainstream kosher supervision agencies certify it "Kosher for Passover" -- look for the label.

Interestingly, the Sefardi Jewish community does not have a prohibition against kitniyot. This creates the strange situation, for example, where one family could be eating rice on Passover - when their neighbors will not. So am I going to guess here that you are Ashkenazi and your wife is Sefardi. Am I right?

Yahrtzeit of Rabbi Moses ben Nachman (1194-1270), known as Nachmanides, and by the acronym of his name, Ramban. Born in Spain, he was a physician by trade, but was best-known for authoring brilliant commentaries on the Bible, Talmud, and philosophy. In 1263, King James of Spain authorized a disputation (religious debate) between Nachmanides and a Jewish convert to Christianity, Pablo Christiani. Nachmanides reluctantly agreed to take part, only after being assured by the king that he would have full freedom of expression. Nachmanides won the debate, which earned the king's respect and a prize of 300 gold coins. But this incensed the Church: Nachmanides was charged with blasphemy and he was forced to flee Spain. So at age 72, Nachmanides moved to Jerusalem. He was struck by the desolation in the Holy City -- there were so few Jews that he could not even find a minyan to pray. Nachmanides immediately set about rebuilding the Jewish community. The Ramban Synagogue stands today in Jerusalem's Old City, a living testimony to his efforts.

It's easy to be intimidated by mean people. See through their mask. Underneath is an insecure and unhappy person. They are alienated from others because they are alienated from themselves.

Have compassion for them. Not pity, not condemning, not fear, but compassion. Feel for their suffering. Identify with their core humanity. You might be able to influence them for the good. You might not. Either way your compassion frees you from their destructiveness. And if you would like to help them change, compassion gives you a chance to succeed.

It is the nature of a person to be influenced by his fellows and comrades (Rambam, Hil. De'os 6:1).

We can never escape the influence of our environment. Our life-style impacts upon us and, as if by osmosis, penetrates our skin and becomes part of us.

Our environment today is thoroughly computerized. Computer intelligence is no longer a science-fiction fantasy, but an everyday occurrence. Some computers can even carry out complete interviews. The computer asks questions, receives answers, interprets these answers, and uses its newly acquired information to ask new questions.

Still, while computers may be able to think, they cannot feel. The uniqueness of human beings is therefore no longer in their intellect, but in their emotions.

We must be extremely careful not to allow ourselves to become human computers that are devoid of feelings. Our culture is in danger of losing this essential aspect of humanity, remaining only with intellect. Because we communicate so much with unfeeling computers, we are in danger of becoming disconnected from our own feelings and oblivious to the feelings of others.

As we check in at our jobs, and the computer on our desk greets us with, "Good morning, Mr. Smith. Today is Wednesday, and here is the agenda for today," let us remember that this machine may indeed be brilliant, but it cannot laugh or cry. It cannot be happy if we succeed, or sad if we fail.

Today I shall...

try to remain a human being in every way - by keeping in touch with my own feelings and being sensitive to the feelings of others.

With stories and insights,
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